Speak up if your medical record isn’t correct

One of the simplest things patients can do to help future researchers conquer this disease is to make sure that our medical records accurately reflect the treatments we got, the side effects we experienced and the like.  This is especially important for those of us who have rare diseases, where every patient outcome is important for analysis, since there are so few of us.  Computers are getting really good at pattern recognition and sorting out disease subtleties, but they get easily confused when fed bad data.  Since electronic medical records are so widely used, the data in them will become a great resource for researchers.

Our doctors do a great job documenting our care, but still even small errors can creep in.  We’re the ones with the most to gain or lose in this process, so we have a good reason to be an extra set of eyes on what ends up as our “story”.  We don’t need to make more work for the clinicians, but it makes sense to speak up if you see something that doesn’t look right.  (If you’re like me, you’ve gotten a crash course in this disease after diagnosis, and have first hand experience of a lot of different treatments and side effects.  We can be part of the team to make sure is accurately told.)

I can see my case notes in the patient portal for my oncology center.  In my case, even though doctors had done excellent work tracking everything that happened to me, my chart still had an important error.  The end result of a series of small problems is that my record showed that I have intrahepatic cholangiocarcinoma, when in fact I have the distal form.  Distinguishing these disease variants could be really important in an analysis, especially since there are treatment and outcome differences.  I mentioned that this diagnosis looked odd to my oncologist, and he investigated to see how the problem happened.  He was really glad I brought it up.  Hopefully, the error won’t happen in future for any other patient.

As a long time software developer, the idea that I could be a bad data point that slows down critical research drives me wild.  Thanks for listening to me rant!